Regular Channel 19 readers by now know Anderson, California-based owner-operator Howard Salmon and his and Mary Salmon’s son, Liam. I last checked in with them just ahead of Liam’s fifth birthday — Howard says thanks to all who sent cards. Salmon sent along a video he’d broacasted via his own social channels expressing support for a resolution making its way through the current House of Representatives that would itself support the notion of making May 17 National DIPG Awareness Day.
Liam “was diagnosed earlier this year with DIPG,” Salmon said in the video. “For those who can’t speak right now, we need to speak for them. For my son Liam, I would like you to urge the House of Representatives” to pass the resolution.
The resolution was first intro’d in this Congress early on in February of 2019, and has since gained more than 200 cosponsors among legislators. DIPG — or diffuse intrinsic pontine glioma — is a brain tumor that occurs in a part of the part stem that helps control the body’s automatic functions. It affects children almost exclusively and is very commonly fatal.
The May 17 day is already recognized by a number of states, beginning with Maryland naming the date on the anniversary of the death of six-year-old Michael Mosier, according to the Michael Mosier Defeat DIPG Foundation. Since 2017, when that happened, a myriad other states have established the day either by proclamation of the governor or through legislation.
A national resolution, Salmon and other advocates believe, could do wonders for awareness to take what progress is being made on treating DIPG to another level. “Once you get people aware of what it is, then you start to get people more involved in it,” he said. Then, “baby steps” in treatment research have a real shot at getting bigger and bigger and bigger. The sad part of it: “how many more kids have to die” before we get there? he asked.
California-based advocate Janet Demeter’s son Jack died at age 3 after being afflicted with DIPG, and Howard notes Demeter was instrumental in getting California to recognize May 17 for DIPG awareness. Advocates like her are pressing for passage of the resolution before the end of this Congress, likewise some time on the House floor to raise the profile of the disease and its affliction of children, writing letters and calling Congressional offices.
Demeter says her advocacy efforts have been frustrating given reluctance of House leadership to really take on the cause, though a resolution of support requires no direct appropriation of money or significant commitment other than putting your name behind awareness of a disease she estimated killed 400 children in the U.S. every year.
As for Liam, Howard reports the young man’s illness has progressed and has inhibited much of his activity.
Yesterday, Howard was working on a way to fit his vehicle with a wheelchair ramp in order to take Liam places more effectively. He says he appreciates anyone in the audience who has prayed for his son and the family, and other assistance that’s come through.
“This is the worst thing I could imagine anyone ever going through,” he said of Liam’s illness, discovered early this year.
He sent along this message, too, regarding House Resolution 114:
I am asking everyone that is following Liam’s stories to please call their congressman and tell them to please sign the House bill “H.Res. 114.”
The drivers and companies that know me are aware of the terminal brain tumor DIPG that my son has.
We need to have our country aware of childhood brain cancer and we need it now. How many more children will die before we get help? All the money spent on toilet seats or a single satellite launch could help millions of children.
Find resources related to the resolution via Demeter’s DIPG Advocacy website.